My crime is that I am the mother of two vulnerable disabled young adult sons

I sit here on Death Row. The last weekend of Summer – a Bank Holiday weekend.
I will spend all the sunny hours, …  into the dusk,..then to night hours, often till dawn, writing my appeals.
I won’t be out in the sunshine.
Death Row prisoners don’t get that choice.
With 4 working days to go I can’t be…..
There is no District Court Judge, No Fifth Circuit Appeal , there is no Supreme Court.
There is not as yet, even a Lawyer.
There is no pleasure in my life.
Hasn’t been for years.
I am alone in my Cell.
I am alone in my life.
My last female friend, who has been supporting me, cut those ties on Wednesday … she said she can’t go on, it is making her ill.
For people on death row that is reality.
She did well, she lasted longer than most – She made to the 2 year mark.
Bizarrely, even though I am on Death Row.. I am also suicidal.
Last week when I sat in Soho Samaritans,… on a Thursday night.
I was imagining all the different reasons people were suicidal.
I realised, my reason was different.
I am suicidal, because someone, can’t do their job properly.
In fact are refusing, to do their job properly.
Are being obstructive.
Being negligent.
(That someone should be read in the plural because there are many someones)
And you know what is really sad …. They are people employed by an organisation.
Tasked with Health.
Weird uhh ?
A government organisation.
And no, its no even subcontracted out….
I’m not even dealing with minions who could be forgiven – although I’m not really one for forgiveness.
A five year War does not allow for forgiveness.
A five year War bring distrust, fury, exhaustion, ill health, white rage…..
Oh and Suicidal feelings…..
I could never understand, how people didn’t think, of the lifetime of flashbacks for the Train Drivers.
I never thought at any point in my life I would have to hold onto the fence at my station, when the train I wanted to catch ….came in.
Underground Stations prove more difficult as there are only benches, – I sit down always.
Other days I have to stay indoors because buses, the posh Boris buses where I used feel like a princess riding out into the world.. seem tempting ….
Some days I can’t go into my own kitchen for my kitchen drawers hold catering knifes.
Oh those days I grip onto the mouse of my computer & write emails requesting help… which will be ignored.
Most days however, I love my knifes as they chop fruit and vegetables, – essential for a life long vegetarian who’s aiming for veganism as my nirvana.
I do cry though, because I am too tired to use them to make yummy meals.
When crossing Vauxhall Bridge last week, whilst heading to Ruby Wax’s Frazzled Cafe in Victoria for support…. I stopped & contemplated.
I thought if I put my bags down there by the railings, they would know who I was … Note past tense.
I thought about how I would climb on to the bridge railing.
I can still see in my minds eye 10 days later, the people on the bridge, including two men in grey suits walking towards me.
I wondered what they would do, how their lives would be changed.
I wished it was a sunny day, water might be warmer.
Ha, and then I realised not only could I not climb the bridge, footwear was not suitable, but also rail was way too narrow.
So I would slip off into the water even if I was unsure of my decision.
I read the notice on the Life Buoy which informed me that the river police should be called…. I wondered if the would find me….
“ Don’t kick off till Monday ” was what my support worker had said … It was Thursday evening
Oh Hounslow Clinical Commissioning Group what have you done….. ?
Notes
My Death Row experience is very real to me.
My crime is that I am the mother of two vulnerable disabled young adult sons, with complex medical needs.
My Appeals that I will be working on, are more reports & letters. Ones that won’t be read or understood but are demanded.
I already work 168 hrs a week caring. So in-between caring, sobbing & despair , I am typing. I am a two fingered typist on a good day, one fingered on other days.
My day starts at 6am & finishes at 1 or 2am. I then start the night shift. Providing backup for night staff I employ.  (soon I will not have night staff as previous budget running out).
Hounslow Clinical Commissioning Group have withheld for 15 months with no explanation awarded NHS Continuing Health Care Funding.
This funding was awarded in June 2017 following years of fighting. Complex Assessments, crate loads of Medical Reports, plus a huge dose of blood, sweat and tears on my part.
Both of my sons were recommended 168hrs a week care to enable them to live as normal lives as they can.
There was then a staling point – It all went quiet.
We had some previous funding, we muddled along. I used all my younger sons funding to pay for older sons medical support worker of his first year in Uni. I kept waiting for the funding to start.
It didn’t, so I spoke to the ombudsman. He said stop shilly-shallying woman, start complaints procedure.
The Director of Joint Commissioning requested a meeting at my home on 19th of June 2018 – A meeting where they asked leading questions & bullied my sons & myself.
I was impressed, they thought they were so above the law that they did this in front of witnesses. For example they told my 21 & 18 yr old  “To go to bed early” & not to expect to live a normal life as normal people did.
When asked why they were here. They said because they wanted to meet my sons & learn about their lives. They were told but “You have all that information”. “ So why are you here ? “ their reply was this “ BECAUSE I can & BECAUSE I want TO “
Because my sons can walk & talk, The Director of Joint Commissioning decided that 40 hrs would cover care needs of 168hrs a week (they are not a medic) – they have refused along with a colleague to provide any explanation as to how they, or Nurse X, if she exists, came to that conclusion.
Nurse X is shadowy figure who is hinted at. But who has never contacted me in 15 months or provided his/her medical opinion in writing.
Death Row is a lonely place – We now have 4 working days to get my sons back into education. Without nursing staff they cannot attend. All previous funding will run out in approx 2 weeks time. This means I will have to sack most of my carefully recruited & trained nurses & medical Carers (who hold degrees in medical science or similar).
Because no staff means that my sons will die, the Director of Joint Commissioning and their colleague will be potentially attending 2 inquests. Or three inquests if, I have to do all the care because my health is so destroyed I just can’t do it anymore even if I wanted to.
London Borough of Hounslow refuse to accept there is a Safeguarding Risk.
There is, but they cannot be bothered to investigate.
I have had my request of a Serious Case Review rejected as they all believe their own manufactured fairy tales.
Notes Re my Suicidal Feelings 
To anyone anxious – I am fighting to survive – I visit & phone Samaritans, I have booked & emergency appointments with the Listening Place – Suicide Befriending, I visit the Frazzled Cafe, I have a therapist.
No GP is of no use (another story).
Whilst it may seem strange, I am completely sane – My Suicidal Feelings are caused entirely from situational distress.
I alternate between empowerment & desperation. I cry a lot , I have less patience with the incompetence that I am surrounded with. I stand no shit.
I also sometimes laugh – but it is very dark humour. I can retell a tale of despair from the morning to be something very funny by nightfall.
I swear an awful lot – it makes me feel better, but does surprise others, which I find in itself amusing.
 
How Can You Help
 
Follow me on Twitter, retweet my videos, retweet my comments,tag journalists in, online papers or MSM, send messages of support they make me feel less alone. Share my stories on Facebook or anywhere else.
Find me on Twitter @SarahSpoorUK
Video series unfolding on twitter -My Disabled Sons are being denied an education – They won’t be going back to College or Uni in September
Home spun Video’s which I am making at home when I get five minutes in between being a full time unpaid carer working 168 hrs wk
Two videos on above
Sarah Spoor
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